Tuesday, April 30, 2013

What We Know...

They said there would be 1 or 2 rounds of chemo before transplant.

They said it.
But I didn't believe it. Because he did so well.
"He recovers very well from chemo," said the doctor.
(I'll put that on his resume, okay?)

He did so well with everything...so they had actually started the transplant process. Nothing set in stone. Nothing promised. In fact, I agreed not to hold them to any calendar dates. Just some conversations. A few appointments scheduled.

There was optimism about the results of the first round of chemo, the bone marrow biopsy that was performed on Monday. I asked the doctor, "is this optimism based on a 'good feeling' or on actual science?" His response was that Sam's quickly rebounding counts were worthy of real optimism.

I believe that this was the first time (with us) that they were surprised by results.

Sam is not in remission.

There is still leukemia present in his bone marrow.
Not nearly as much as there was at the beginning of the month.
But enough to require another round of more-intense chemotherapy.
Enough to postpone the transplant, but not indefinitely.
Enough to set in motion some calls to colleagues (theirs, not mine) to collect opinions about what to do next.
Enough to get us back to the hospital sooner rather than later.

We don't have a lot of answers.
In fact, we don't know much at all right now.
We know that Sam will go back into the hospital on Thursday or Friday.
We know that the road will be rough.
We know that we are scared.
We know that Sam is not, and for that we are grateful.
We know there will be laps and hamburgers and multiplication problems and probably way more SpongeBob than any one kid needs.
We know there will be the routine of hospital life and we know there will be new and different challenges.

We know that we will continue to pray and hope and believe and wait and love and breathe and then pray some more.
We know that you will all be with us...and we are thankful.

More to come as we climb this mountain...

Wednesday, April 24, 2013

110 and Outta Here! {day 23}

Well, a jump in ANC from 22 to 110 buys you a first-class ticket home!

But first one final hamburger...
...a bang-up pack-up job by Dad...

An EKG, echocardiogram, and dressing change later....

Tentative schedule:
Bone marrow biopsy and lumbar puncture on Monday. These will determine Sam's official remission status...which leads us directly into the bone marrow transplant process. More on all that as it plays out.

With gratitude to everyone for all your love and support -- we are eternally grateful and thank you so very much for the packages and mail, the videos and emails and text messages and jokes and drawings and gifts...the meals and the baked goods and the LOVE that we feel each and every day for our whole family. Thank you thank you thank you.

Blessed are You, our God, who has brought us to this moment of celebration.

Tuesday, April 23, 2013

Twenty-Two {day 22}

Every morning, somewhere around 4am, the night-time nurse draws Sam's blood for the lab. This blood is sent down to the laboratory, where it is analyzed and the teensy tiny neutrophils are counted.

And then, usually around 7:30am, the resident comes in to do a morning exam. This person also has, usually, read the lab report. Residents change regularly -- they do one-month stints on the HOT unit for the most part.

But starting at about 6:30am, there is what seems to be a flurry of morning activity in the room. Everyone does their best to be quiet, but the nurse is in and out, the housekeepers usually empty the trash, and it just seems that there's a lot more activity. Each time the door opens, I pop my head up, hoping it's The Person With The Lab Numbers. And if it isn't? I pretend to be asleep...but I'm not really.

(Oh, and let's all remember that I am terribly nearsighted so it's often a guess as to who is walking in the door based on the general blurry shape and color of their clothes. I've gotten to be a good guesser.)

This morning, at about 7:30am, the resident came in. He is a really good guy, and Sam seems to like him a lot. He came over, asked me about Sam's night, and said that he would let him sleep and examine him later. Then I said, (trying desperately to sound nonchalant and not DESPERATE) "do you have his labs?"

"Oh!" he said, like it wasn't important at all. "Sure! Well, his ANC is only 22."

ONLY!? 22!!?

"Twenty-two is NOT only!" I said. "Twenty-two is a NUMBER!" (I'm sure he thought I had gone mad at this point.) "Twenty-two is SOMETHING! Twenty-two on day 22!"

He laughed a little and agreed.
And then I did a little happy dance.

Is it a great number? No. But it is a number, and a good sign that Sam is headed in the right direction: up! (And in Sam-historical terms, it is the earliest day that he "got numbers" and that is a good thing.)

And so we continue to wait and wonder and hope and prepare....while eating hamburgers and smoothies, doing laps and and homework, being sweet and snarky to nurses and doctors...and all that jazz.
Recording laps
Smoothie recipe -- turns out that food service will make this one for us!
Sam had two visitors today from school -- he was so excited to take a science test, a math test, and a spelling test!
Holy cannoli, check out all those laps!
Sam has actually been in a spectacular mood. He chats with doctors and nurses, he is friendly to folks we meet, he flirts with babies and he pokes fun at his parents. Overall, he's been a lot of fun to be with in the last few days. He's still ornery when he wants to be, and there is far more Sponge Bob in my life than I could ever wish on anyone, but let me tell you, this is my wonderful kid and I'm so glad his sparkle is shining through.

So we wait...

Monday, April 22, 2013

Rinse, Repeat {day 21}

Sam's To Do List Today:
 drink a smoothie
do homework
do laps
watch full house (be shocked to find out that Michelle is played by two people)
eat a hamburger
play hangman 
eat a peanut butter & jelly sandwich
do math with Zeyde
eat a hamburger
do laps 
banter with nurses
eat a plum or two
drink water
read books with Karen
"She's MY friend, mom. She came to see me, not you."
go downstairs for a quick breath of fresh air
play hangman
choosing words from his new Dragonology book
eat a hamburger
drink water
eat apple slices
more homework
watch sponge bob
do a headstand in bed
be absolutely adorable
have no immune system to speak of
wait for tomorrow :-)

Tomorrow they are doing a "manual differential" which means that they're giving the gerbils (okay, FINE, it's probably a machine) that normally count neutrophils the day off and asking a person to do it. Let's hope that poor soul isn't stuck looking for something that isn't there, right? It would be early to have counts but his white blood count has risen ever so slightly and his hemoglobin and platelets are holding steady...which are super-good signs that his body is starting to recover. Not getting too excited but it's nice to feel that we are actually progressing even though there's not much going on....

Sunday, April 21, 2013

Wondering {day 20}

What on earth are you just waiting around for?
Chemo treatments for AML are very intense. It drops the immune system down to a complete ZERO. When we say that we are waiting for Sam's "counts" to recover, we are waiting for some neutrophils and white blood cells to grow. It all adds up to an ANC - absolute neutrophil count. This magic number is currently at zero, and that is just what the doctors are expecting.

So we wait around and entertain ourselves with the help of friends and family and nurses....
Judy brought Sam this cool new frog that plays "don't worry, be happy"!
Is this waiting around normal?
Yes. Sam didn't have an ANC until Day 26 in the fourth round. We know that these things just take time.

Why does he keep walking laps? 
Sam is not allowed to leave the floor/unit when his ANC is non-existent. (An occasional late-afternoon/evening foray has been okayed.) In previous rounds, he's gotten exercise by doing silly things, playing catch (or monkey-in-the-middle), jumping on the Wii Fit board, or whatever else has occupied his body and mind. This time, he's into walking laps. Who can argue with the kid? There's an accounting board and many kids spend time walking in circles around the unit. Whatever works, right? Tonight he decided 36 was the magic number. Considering that 22 is a mile, I think he's doing great.
Why does he keep eating hamburgers?
Some kids with leukemia take steroids. For AML, that's not part of the treatment. So this is not a steroid-fueled-eating-binge. Sam has just decided that hamburgers and apple slices taste good. He also ate some pudding and popcorn today. I'm not arguing with him when he wants to eat -- but I do encourage variety. He just doesn't always comply! The nurses and doctors giggle and then I remind them about the day, in the first round, when he ate 9 plums. This is just Sam's way. He will resume normal eating once he gets home, I hope. (Oh yeah, and we are usually mostly vegetarian, so the hamburger thing is even more funny to me....)

Do you know how hard it is to play hangman against someone who makes up his own words?
He has made a list of words. Some are real. Some are not.
What was today's creative-hospital-make-do?
 Today, Sam complained that the towels are too small. He's not wrong. (And NO, I am not bringing my own towels. There are limits. I do not want to wash his towels.) Thanks to the genius suggestion of our nurse, I used silk-tape (the medical tape that they all use) to tape two towels together for Sam's bath. He was overjoyed at the full-size towel. This picture illustrates the size of the towel I created for him in contrast to the actual towel sizes. You've got to love it, right?
Is it all fun and games?
No. Sometimes there are dressing changes and doctors who poke at owies. Today there were plenty of moments in which Sam felt "poor me"-ish. I let him give me the list of irritants, of wishes for going-home, of annoyance with the pole, of frustration that it takes so long for the next hamburger to appear, of a desire to just sit and watch tv and shut out the world.....and then we moved on to giggling and tickling and playing and reading and eating and yes, even some Sponge Bob TV-watching (oy, there was a marathon on today. I'm so tired of that yellow creature.)...and we just deal with it.
And so we wait....waiting is expected.
Which doesn't make it any more fun but at least it makes it a tiny bit less scary.
We are so grateful for his spunk and spirit, his energy and his enthusiasm. They give us hope and help us rise above the day to day....

Saturday, April 20, 2013

Shavua Tov Indeed {Day 19}

A good week to all indeed. I love recovery weeks. After the highs and lows of the chemo working its way through Sammy's body my real Sammy comes out on the other side and is his funny, snarky, hungry, lovable self. After so many months removed from the HOT unit, I had forgotten why he was so irritable a week ago, and that transfusions were in order, until the doctors recommended it (duh!?). And this week I am thrilled to be with my lap counting, energetic, starv'n Marvin, hamburger guzzling little boy (over 20 full-size hamburgers and counting in 4 days).

Sammy started his Shabbat morning with me bringing all the siblings up to keep him & Ima company. He took everyone for laps including Zayde (Bubbe said she would keep an eye on the room, just in case, since we had an entourage Vince Chase would have been jealous of). 

Sammy had a great time taking everyone for laps and showing him how he counted them on the board. He even let Yael hold his counter and keep track for of the laps for him on it. Solly loved the running (when we couldn't catch him), but was really frustrated by not being able to play in the playroom. (But whhhhyyy?) Everyone had an incredible time hanging out together. Throughout the day Nurse L took such amazing care of us with her winning smile and endless good cheer. 

When the whole mishpacha (family) left we weren't sure what we were going to do with the rest of our days (other than order and eat more hamburgers).  Just after lunch Pete Holm arrived from www.Frog4Life.com, that's when the day really took off. To honor the memory of his son, Joshua, Pete comes to the HOT unit to allow the kids to build a stuffed animal. Sammy was entranced. Pete's son and a friend entertained Sammy and the kids for several hours by making it snow (spraying the stuffing everywhere for a burst, with permission of course), and stuffing a boatload of animals for all the kids and their siblings who wanted one today. Sammy stuffed a frog (are you surprised?) and dressed him in a karate outfit (foreshadowing for the evening movie). 

And then the fun really started. The boys took out their yo-yos. From there the entertainment began. I wish I could have taken pictures of all the tricks the boys showed Sammy, but there were so many and the yo-yos moved so fast. Sammy watched and watched, assisted with the animal making, and loved using the swifter after it "snowed" onto the floor. They even gave Sammy a yo-yo (two really) of his own so he could learn how to use one. He was simply in another world. And the boys rarely gave him a moment to breathe. They were both right there present with him the whole day. They reveled in having an audience and an apprentice. And I sat there and took it all in as Sammy stayed with them from the moment they opened shop until the moment they had to pack up and leave for their nearly four hour drive back to Eau Claire. The love and enjoyment was palpable. The boys were miracles in action and I swear the yo-yos almost never stopped moving unless an animal was being stuffed for a little kid.

After that we went back to the room, ate some more hamburgers, the Millers came to visit while up here for a family event and Aunty Jess Facetimed for a moment. We ate another hamburger and put the original Karate Kid in the DVD player. We swished, we brushed our teeth, we got our PJs on, turned out the lights and sang shema as we welcomed a wonderful new week and said good bye to a day filled with love, family, friends (new and old), gifts, hamburgers (of course) and my little boy full of smiles, good cheer, curiosity, humor, complexity and charm. If we have to be here it doesn't get any better than this.

Thursday, April 18, 2013

Sam's Sunshine {Day 17}

It may have rained all day outside, but it was gloriously sunny inside. Sam was in an incredible mood from the moment his feet hit the floor until he lay his weary head down for the night. It is clear he is feeling so much better than he did even last Thursday, and how much of a difference a week makes.

Sam continues to thrive on hamburgers and apple slices alone. He had two burgers before 1130am when our good friend KP stopped by for a visit. We had a really good time putting ten laps up on the board, laughing and telling stories. You know Sam is having a great day when laps are more important than leaving his IV pole behind and he walks with it without a single complaint. Sam loved hanging out together and looks forward to the promised overnight with KP, his son, A-Dawg and their actual dog, Bandit. Sam was excited for a pure guys night in with our favorite, most powerful clan. Sam was very particular about asking where the women in KP's life would be to make this a guy's night in actuality. It was very funny to hear him nail down a lawyer for specific details for this future event.

In the middle of KP's visit Bubbe and Zayde arrived for their semi-daily visit. Everyone sat down and caught up. Zayde sat with Sam and asked him how his night was. After KP left to get back to work Zayde and Sam enjoyed themselves doing math while I went for a walk. 

Sam is loving his math assignments and the extra problems Zayde generates on his computer. The two of them spent almost an hour doing problems and while I was out of the room such outstanding gift boxes had arrived. Sam, Bubbe and Zayde waded their way through all the packages and looked through all the amazing items. Sam especially loved the iTunes cards, stickers and Pirate's patches. 

I swear the hilarity never let up all day. Sam was in a good mood from start to stop and just a pleasure to be around. One of the big hits to arrive was a lap counter. Sam thought that was the coolest thing since, well... a hamburger. He carried it with him for the rest of laps that day from ten up to 30. He loved both clicking the counter as well as writing his laps on the board. He loved hearing the clicking sound and resetting it and then recounting when he went too far and had to get to zero and then click back to the number lap he was on. 

We just kept clicking through the rest of his day and he rarely let the counter slip from his happy fingers. Throughout the afternoon I swear Sam ate four more hamburgers just as a personal challenge. I'm pretty sure he ate four from afternoon through bedtime. The nurses have the full count, but the burgers just kept coming one on top of the order. Every time Sam just finished one he would wait a few minutes and then sort of giggle as he'd say "Dad...I'm still hungry. Can I have another hamburger?" Who can say no to this? After months of never eating off the menu, how do I turn down this starv'n marvin's request? You would think I never fed him all day except I have nurses and receipts to back me up that I am ordering his food two minutes after every request. Downstairs they swear I am eating half of these burgers (again I have nurses who come in half way through every burger he's requested). Thank God for witnesses or I would need the witness protection program for parents who eat their kid's food. 

We had our favorite Nurse LA all day poking and prodding Sam with her humor and verbal barbs. Sam teased T and any other nurse he felt needed a verbal tickle as he passed. Sam just filled every moment of this day with his warmth, humor and good cheer. His joy overflowed to everyone who spent time with him or saw him today. He just shone like the brightest sun as if all was right with his world and as if nothing could touch his mood no matter what. We were all blessed by Sam as his mood allowed us to pretend that none of this mattered and it was just another day surrounded by people we loved and who loved us. May all our days be so blessed and may the ease with which Sam cruised through this day be multiplied throughout his lifetime. 

Wednesday, April 17, 2013

Learn & Walk {day 16}

Another wait-and-wait day on the HOT unit. I'm so grateful that so far, what we mostly do is wait. We've been so very lucky with Sam's reaction to everything -- his fevers have been manageable, his infections minimal. I'm thrilled that we have to fill our time with walking laps around the unit and reading books and watching re-runs of Full House (Sam's new favorite TV show...and he is totally in love with commercials -- sidebar: in our house, almost all TV is consumed via Netflix or DVR, so commercials are at a total minimum. Sam is in love with commercials, so much so that when I say things like "at the commercial, will you do x" and he says, "no, I don't want to miss the commercials!" Seriously!?)

Today was a busy day that began and ended with more hair care:
First with the last of the duct tape...
Then his kindergarten teacher (last year -- Sam is in first grade now) came to visit and he taught her a trick for multiplying 9s that Karen taught him over the weekend.
 He dragged her along on 5 of his laps (his goal for today was 40 -- he set it, not me!)
 And read books with her!

Then, when she left, his current teacher, Ms. M, came to visit for some serious homework. She even gave him a spelling test! (I heard he tried to convince her to let ME proctor the next test but I think she saw through his little ploy. Not that I'm worried -- he got a perfect score!)

While Ms. M was hanging out with Sam, Michael and I had a long meeting with our transplant surgeon, Dr. M. He gave us "Bone Marrow Transplant 101" and we learned a LOT, including how the donation will go, what will happen, what we can expect, etc. There was a whiteboard and a chart and a lot of information. Much of it we already knew, some of it I remembered from high school biology (thanks, Ms. Vogt!) and some of it was a little bit scary. Dr. M is incredibly confident about the work that he does, and we have a lot of faith and trust in his skill and experience.

And at the end of the day, it really does come down to biology. How Sam's body responds, how the leukemia responds....we just can't control all of that. We just have to hope and pray and believe...the miracle of life is an awesome one, and the mere fact that the bone marrow cells will enter into Sam through his central line and find their way into his bones to create new, healthy marrow...it truly is miraculous and faith-fulfilling.

So I've been pondering, as I am wont to do...what blessing does one say when a bone marrow transplant is being done? Do we thank God for this singular and unique moment, with the Shehecheyanu blessing? Or do we say Asher Yatzar, the amazing words that praise God for our bodies and the miracle that they are?

Perhaps both. I'm looking forward to that moment when we say both. You can never have too many blessings, right?

Tuesday, April 16, 2013

Hair Care {day 15}

A nice quiet day on the HOT Unit. Still no counts, some more not-quite-normal-temps-but-not-quite-worrisome-fevers, a few more hamburgers eaten, and a generally upbeat day for Mr. Sam and his crew of loyal attendants. Or is that royal? Same idea, right?

There was schoolwork and some art projects...
A little FaceTime with friends...

At some point today, we noticed that Sam's hair was falling out. Sam and Uncle Josh had shaved off most of it, but now we are at the falling-out stage. So Sam did a lot of this (below) trying to get the hair out. Mostly because it was fun to watch the little flecks of hair all over the white bedsheet!
We took a little expedition downstairs today for the briefest time (after 5pm, when the hospital is emptier, just a quick jaunt) to catch just a breath of the nice springy fresh air.

But then it was back upstairs for what ended up being quite an adventure: hair removal! We had tried a bath (no help) and just plain head-rubbing, but these didn't get a lot of hair off the head. And frankly, those little hairs were getting annoying. So I suggested duct tape. At first Sam thought I was crazy! But then I showed him how (a la a lint remover) and he was intrigued enough to try....three rolls of duct tape later and his head is much more....bald.

(the wifi was giving me trouble so I hope this video works.
Otherwise go to: http://youtu.be/VFda-3vjuHM)

That occupied our time for a while until we finished our laps for the night. Sam decided that 30 was today's magic number, so we did it in a few batches, but with the bulk of the laps before bed!

 I love this picture. His almost-bald head and that one word: "survivor." Yes, he is. And not just because we plan for him to beat this thing, but because he is embodying the ideal of surviving -- to carry on, despite hardship or trauma. In this case, to be silly and fun-loving even in the midst of the ridiculousness of hair loss from poisonous chemicals that hurt before they help....but oh, they do help.

Even in the midst of neutropenia (that's a zero immune system), even in the midst of nausea and discomfort and separation and loneliness....there is light. Sam is our light. And we are so very grateful.

Monday, April 15, 2013

Whoosh {day 14}

One of the interesting/sad/scary things about being in your own little hospital world is that outside events feel very far away. I did not glue myself to the tv as I would have done if we'd been on the outside, but we were very aware of the terrible events in Boston today. My heart goes out to everyone, my prayers are with you. Janet Johnson ran the Boston marathon today wearing this bib:
 I don't know a lot about marathons, but I do know that I checked all the websites (thanks, Google) and I believe that Janet is okay. Her daughter is David's fifth grade teacher, and I'm thinking of all of them, holding them in my prayers. I know that she and her family have been praying for us...tonight we turn that around. So many friends and loved ones in Boston today....much love from our little corner of the world.
Today started like this....a little gray...
And I was nervous. Sam seemed a little crabby and sleepy this morning. A conversation with the nutritionist got me a little bit worried as we started strategizing to just get some darn food into the kid. His not-eating hasn't been due to nausea, he says he feels okay. So it's something else that he can't quite pin down....he's just feeling crummy. He's been running a little fever for quite some time, and that can get you down. We know there seems to be a redness around his line, so this afternoon there was a whole crew to observe his dressing change to check it out. (I will spare you all the picture that I took, it was mostly for the purposes of being able to compare it tomorrow.)
He was still sleepy and crabby in the mid-morning part (suddenly this blog post got out of order, but humor me, okay?) when the room-cleaning smell drove us out of our room (unusually strong today?) and we took our book to read into the playroom. (We are reading a great series now, the first one was called Toys Go Out. Very cute!)
But slowly...slowly....he started to return to himself. A visit from the music therapist was great for him, and he drank a smoothie that I made in the blender (aha -- I realized I could totally replicate a home-food with the blender that is available on the unit. Whew) -- a whole lotta calories definitely helped, I think.

And then, in walked Rabbi Steve with a whole bunch of silliness to help us celebrate Israel's birthday! Israeli chocolate! Bamba! Bissli! And of course, hats and noisemakers and sunglasses, which he instructed Sam to hand out to every visitor. Because of course, like the State of Israel, Sam's future is BRIGHT.
I think the shirt says it all: Team Awesome

 Things got even better after that. He read me this book....
We took the pulse-ox level of the extendable fork (thanks, Jen G!). It didn't work. But you gotta love the patient and amazing pediatric oncology nurse who was willing to try.
 We told gobs of jokes. This book below is the creation of Miss Melissa, Sam's incredible Sunday School teacher. She brought in the pages and his whole class illustrated them. This version is Sam's, and it's the original. Copies were made and they're being sold for donations to the MACC Fund -- you can get one at Am Shalom. Amazing!!!!!
 A project was devised by the Child Life Specialist -- she suggested that we make a duct-tape-wallet. By "we" she must have meant "mom" and check it out -- I did it! She provided us with instructions and Sam cheered me on as I created this funky little wallet for him to put his stuff into. Cool, huh? I think I have a new hobby. Or not. I insisted that he show it off, since I worked so hard.
 The other cool thing that happened today was this gift from the author and illustrator of Z is for Moose. You'll recall that Michael explained that it was our new favorite book, and a little twitter conversation with the illustrator later....wow. Do you see what "S" is for? That is incredible. Sam was so excited to have his very own copy of this really funny book. Thanks, Kelly and Paul!
 It got better. Sam looked over and said, "you know, I think I want a hamburger."

I said, "wha!?" He said, "no, really, a hamburger. From the kitchen. With ketchup."

So I ordered the (mostly vegetarian) kid up a hamburger. From the food service.

And he ate it.

Then he said, "can I have another hamburger?"

I know, right? I was just as shocked as you are.

So I ordered up another one. And he ate a little more than half of it.

I think the nutritionist is going to plotz tomorrow when she sees all that was consumed!

So we went on a little walk to work off the hamburger, and we did 11 laps, which is half a mile. Not bad, right? (I did have to beg for the last lap. I thought 11 was a nicer number than 10, but Sam argued that 10 is a nice even number. Argh, math arguments!)

That "whoosh" in the title is me letting out my held-breath just a little. We're not out of the woods in this cycle yet, of course, but it's nice to feel a little return to "hospital normal" with a kid who seems to be feeling better. I'm still holding my breath just a little bit, you never know, but....whoosh.

I know he's feeling much better because at 9pm he was still awake and asked for a snack (apple slices) and that is much more my Sam. His temperature has gone down considerably, although it is still not "normal" (like normal for a normal person. Anything under 100 in Cancerland is considered "okay" and he's hovering in the high 99s now.)

But I'm okay with that. It means the antibiotics are working (his line area already looks much better) and it means that something is working inside....grow, cells, grow!